Inhibitors

A Consumer Council for Inhibitors

Laurie Kelley October 30, 2006


I was in Chicago on Thursday and Friday to facilitate the Novo Nordisk Consumer Council meeting; this is the third such meeting which brings together parents and patients who are also opinion leaders for a day of analysis and brainstorming to determine better ways to educate and empower inhibitor families. Novo Nordisk flew our council members in from Ohio, California, South Carolina, Rhode Island and Pennsylvania, and despite stormy weather, which delayed many flights, most members were able to gather for an elegant dinner at Nick’s Fish Market to get reacquainted.

The next day was productive and stimulating. After breakfast we dove into our agenda, discussing inhibitor patients’ needs and ways to address them. Council members brought in sample educational materials for other chronic disorders, which we analyzed for their usefulness by rating content, layout and user-friendliness. We had a discussion after lunch about the business structure of the hemophilia market and how products are valued. Insurance played a large role in all we discussed.

The Consumer Council was designed to be a forum for inhibitor patients to vocalize they concerns directly to a manufacturer, and provide feedback to a manufacturer on its own marketing materials and efforts to educate. It also allows a manufacturer to directly educate consumers, who will in turn educate consumers back from where they come. It is a great two-way interaction that benefits everyone. I was very sorry to leave my good friends Friday afternoon, many of whom remained for the Novo Nordisk Inhibitor Summit meeting on Saturday. Me? I chose to be in Boston for my daughter’s 16th birthday. In all the years I have worked with the hemophilia community (17 now) and in all my travels, I have not yet missed any of my three children’s birthdays.

On the plane ride home, no celebrity sighting but something just as amazing. Sitting next to me was a 30-year-old man, who looked remarkably like a 20-year-old college student. Brett was charming, talkative, and full of ideas and life. He owns an entertainment consulting company, and teaches teambuilding, goal setting and leadership, topics near to my heart. He simply exuded energy, enthusiasm and zest for life. When he asked what I do, he listened with much interest. When I finished he told me he knew a guy with hemophilia. I felt it coming–most likely I know him, too! Sure enough, it was Ali B., my son’s counselor from Paul Newman’s Camp Hole in the Wall Gang in Connecticut! Is that strange, or what? Yes and no; things like this happen a lot, the more I travel and chat with fellow passengers. Brett and I met as strangers and parted as friends, vowing to share our entrepreneurial experiences in the future and stay in touch. I didn’t get home till 2:30 am, but appreciated a happily surprising end to a great trip!

When Hemophilia Throws a Curve Ball

Laurie Kelley October 2, 2006


This past week I was reminded first how blessed I am to have a son with “only” hemophilia, and second, how important it is to remember our community members who are in the hospital or confined at home. I visited Rich P., a 23-year-old with hemophilia and inhibitors, who is as compassionate as he is passionate, and who is as proactive as he is intelligent and thoughtful. He is a leader with the NHF Youth Commmittee, on at least two patient advisory boards, a full-time college student, and has volunteered on two trips this year to help the poor in Jamiaca and in New Orleans.

Sadly, Rich has been hospitalized for over two weeks, for complications related to his inhibitor. Rich called me the day he was hospitalized, and would be an inpatient for another two weeks. For a guy as active as Rich, being immobilized in the hospital is nothing short of mental torture. When I visited he was surrounded by balloons, cards and stuffed animals and eventually his wonderful friends. As blessed as he is with charisma and a loving family, he was suffering terribly. Yet he still had the kindness to ask about my family and work! Some devoted friends in the hemophilia community have been visiting him, advocating for him, and keeping his spirits high. I was proud to see how our community cares for its own. And I was completely impressed and touched when the VP of a factor manufacturer traveled hours to spend an afternoon with Rich.

Thankfully, many of us will never know that kind of suffering, thanks to advanced treatment. But once in a great while, hemophilia throws us a curve ball. Do you know of someone who is bed-ridden, in the hospital or in pain due to hemophilia? Don’t forget them. Send a card, flowers, make a call. You won’t believe the difference it will make in their spirits. The attention you show really helps relieve pain, anxiety and loneliness. Bless all of you who care for the sick, suffering and lonely in our community.

Novo Nordisk Summit Meeting a Success!

Laurie Kelley September 25, 2006

I attended a great event over the weekend–the Novo Nordisk Inhibitor Summit in Baltimore, Maryland. About 45 families with inhibitors attended this private event to network with each other and to learn more about inhibitors. This is the fourth one I have attended since they were inaugurated last November, and I think they are one of the greatest things happening in our community right now.

Guest speakers included Val Bias (patient advocate) of San Francisco, Dr. Guy Young of California, Dr. Barbara Konkle and Regina Butler, RN, of Pennsylvania, Ed Kuebler, LMSW, Dr. Ed Heller, Angela Forsyth, PT and Dr. Prasad Mathew of New Mexico. Great speakers and experts. Topics included: an inhibitor overview, treatment options, surgery, and exercise and sports.

A wonderful dinner was held the at world-class Aquarium where families were happy to chat with each other all night, grazing on great seafood and gazing at a huge submarine parked right next to the outdoor pavilion where we dined! I was lucky to sit and swap stories with some friends from Massachusetts.

Unusual for our community, the event is not a venue to market products or services. You see no promotion of NovoSeven. Novo Nordisk sales staff are not allowed to attend. The event is managed by a third party, Cadent Medical. Another Summit is being held in Chicago on October 28, and if you have an inhibitor and have not been able to attend so far, you are most welcome! Some travel grants will be available to eligible individuals. Please call (888) 706-6867 for more information or check out www.inhibitorsummits.com. Don’t miss it!

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